In 2006, Andrew McMahon rented a charter bus, cleaned out the air filters and drove it cross-country alone. He was not a loner or a germaphobe. Just an eager 23-year-old with a dangerously weak immune system who feared he might die before performing his newest songs.
The Jack’s Mannequin singer weighed 115 pounds.
“I think there was a point of gross ambition where I used touring to escape the realities of what I was going through,” said McMahon, now 31, reflecting on the year after he completed intense treatments for acute lymphocytic leukemia (a cancer of the blood and bone marrow).
What he was going through? Wasn’t it done? Hadn’t McMahon “survived” cancer, “beat” cancer, been “cured” of cancer? From an outsider’s perspective, seeing that McMahon had been extensively touring would seem like the Californian had recovered from his illness, as physically and emotionally healthy as ever.
But as the nonprofit organization Stupid Cancer put it in its manifesto video, “We believe when the doctor says, ‘You’re cured, go home,’ that is not the end of the story.” In many ways, McMahon’s cancer story had only just begun. He had plenty of cancer-related complications ahead of him, from physical injuries like broken toes to years of post-traumatic stress disorder. It took McMahon nearly a year to increase his weight past 120 pounds and even longer for him to discuss his cancer experience with a therapist. At first, he wanted to forget that it ever happened by returning to his life of touring, a risky operation given that his stem cell transplant made him very susceptible to infection.
McMahon’s struggles aren’t rare among young adult cancer survivors. While McMahon says he has ultimately grown from his cancer experience, survival often comes along with a whole set of issues, some even unique to young adults.
Unlike older people, adolescent and young adult cancer patients aged 15 to 39, or AYAs as the National Cancer Institute (NCI) calls them, don’t often have many peers who have experienced cancer who they can seek out for friendship and encouragement. AYAs especially need support. About 70,000 AYAs get diagnosed with cancer in the U.S. each year, according to the NCI, and they’ve seen little to no improvement in cancer survival rates in almost 30 years. Among this group, cancer is the leading cause of disease-related death for women and second highest cause of disease-related death for men (after heart disease), even though the NCI reports that more than 70 percent of AYAs survive cancer and, of course, most people in that age group never get it. But those young people who do get cancer are often never the same again, as cancer can postpone or cancel the sort of life transitions young adults typically go through and leave even the strongest forever scarred.
At age 23, Shaylynn Grant was diagnosed with stage two squamous cell carcinoma (a type of skin cancer) on her tongue. The news came just weeks after she got married. Her plan to have kids right after marriage had to be postponed. Grant quit her job in property casualty insurance, had part of her tongue removed, and started speech therapy.
Six months after her initial surgery, Grant’s cancer recurred: a patient’s biggest fear. This time, stage three. She dropped out of school, where she was studying radiology, to undergo a combination of surgery, radiation, and chemotherapy. Six months after that, doctors found no evidence of cancer. Grant found no desire to work in radiology anymore, since regularly using the machines that detect tumors would make her worry about getting cancer again.
“Instead of thinking of cancer once every couple of months, it’d be every day,” said Grant, who’s now a 28-year-old stay-at-home mom in Roanoke, Virginia.
That fear of recurrence is relatively common in young adult cancer survivors. As a Stanford University article put it, “One of the cruelest truths about cancer is that even after you beat the disease, it can still come back to kill you.” That’s because cancer can exist at levels too small to detect. Dealing with the fear of cancer recurrence is part of many people’s new normal, as retired cancer psychologist Dr. Andrew Kneier witnessed during his decades working at the University of California, San Francisco’s Comprehensive Cancer Center. Kneier, author of Finding Your Way through Cancer, said the fear of recurrence often does go away somewhere between five and 10 years after cancer treatment, but any single symptom can cause it to flare up until that point.
Even if cancer only comes once, it’s enough to damage someone’s finances. Some AYAs have to leave their jobs or go on medical leave to undergo treatment. Some are uninsured, underinsured, or older than 25 (the last year a person can be on their parent’s health insurance under the Affordable Care Act). A New York Times article reported that cancer drugs cost about $11,000 a month on average, with some exceeding $35,000 a month and $100,000 a year. With young adults often still trying to pay for college or land a well-paying job, these costs devastate, leading some AYAs looking to organizations like The SAMFund and CancerCare for grants and scholarships.